On being a pro-choice special needs mum
I have a child with special needs as some of you will know. She has Dandy-Walker Syndrome, a rare neurological condition that in her case has left her with significant developmental delay, she is still in nappies and cannot walk or stand unaided. She is nearly 6 years old. Our daughter’s condition was diagnosed prenatally and I have written before about that awful time in our lives (https://misebandia.wordpress.com/2011/06/16/a-learning-curve-that-never-ends/). She was diagnosed at 29 weeks of pregnancy and initially the foetal anomaly specialist we were seeing was concerned that she had Edwards’ Syndrome. We opted to have an amniocentesis carried out as I needed to know if our baby was going to live, if she was ever going to come home with us. It was done that same day and we had a few days then to wait for the results. Thankfully the amnio came back fine and her chromosomes are normal.
While we were waiting for the amnio to be done, a lovely and very gentle midwifery specialist sat with us, letting us talk, cry, ask as many questions as we wanted. One of us – I can’t remember if it was my husband or me – asked what life expectancy the baby would have if she did have Edwards. Very gently and clearly she explained to us that every case is so different but that nine out of every ten babies born with Edwards’ Syndrome do not survive beyond their first year and that many do not live beyond the first month. Contemplating the prospect of this was agony. At no time were we pressured into considering a termination. I did ask if the pregnancy would go to term and she explained to us that there was no reason for it not to but that if we wanted to deliver the baby early then we would have to go to England. I don’t recall what I said next but I do remember her holding my hand and saying that some women preferred not to go through the remainder of the pregnancy (remember I was 29 wks at this point) as they felt it would be too painful dealing with the well-meaning but heartwrenching comments “ooh when are you due?” “oh you won’t find it coming now” etc all the comments that are made to largely pregnant women every day. That hadn’t occurred to me but I could imagine how distressing that could be. My visceral reaction was that I wanted my daughter born in Ireland and the midwife smiled and said whatever we wanted to do was absolutely fine. So it was our choice. OUR CHOICE.
I am very open about my pro-choice beliefs, always have been. But I have encountered a number of people who are shocked (their word) that I support the campaign for termination in cases of fatal foetal abnormality. If it had turned out that our daughter did have Edwards I don’t know what we would have decided. But it would have been our choice. Not the State’s, not a doctor’s and most certainly not a pressure group who feel they have the right to tell other couples what to do.
I don’t consider my role/circumstance/position as the proud mother of an adored and beloved child with special needs to be incompatible with my pro-choice beliefs. No one has the right to make anyone else terminate a pregnancy. Equally no one has the right to stop other people from making the choice that is right for them and their circumstances.
Posted on May 15, 2013, in Special Needs and tagged abortion debate, amniocentesis, children, Dandy Walker Syndrome, disability, fatal foetal abnormality, intellectual disability, Ireland, pro-choice, pro-choice special needs mum, Special Needs, termination of pregnancy, TFMR. Bookmark the permalink. 1 Comment.